We are back from our trip to Washington DC with CureSearch to advocate for childhood cancer. IT.WAS.AMAZING! I went with my friend and fellow cancer mom, Mystee. I'm so glad she came with me!! I couldn't possibly find the words to describe the experience, but I will do my best.

DAY ONE:

Wednesday afternoon we met for some training on the issues we were bringing to our representatives and on how to bring it to them. The first speaker was the President of CureSearch, John Lehr. He gave a basic intro of our speakers.

Next we heard from NBC Correspondent Chuck Todd. He talked to us a little about the issues and how to talk to our senators and congressmen.

Then we got to hear from the new president of the COG (Children's Oncology Group, a group of about 5000 pediatric oncologists that have bound together to share research. The are the worlds largest cooperative children's cancer research entity. Most pediatric oncologists in the US are part of the COG). Oh, he was incredible. He talked about what to say to convince them to fund pediatric cancer research (or rather NOT CUT the budget for the NCI, National Cancer Institute). I took notes because everything he said was noteworthy. Here are a few excerpts:

"Tell them before congress started funding NCI 1 in 10 children survived childhood cancer. The government got involved, and started funding research, and now they have a 3 in 4 chance of survival. We have this survival rate because people in these offices said 'we are going to invest! These are our children and we are going to invest!' And then ask them, do you have the courage to invest in our children?"

"We are curing our children with drugs from the 50's, 60's, and 70's. We have only improved our cure rates by giving more, not by discovering more. We push them to the brink. Most of them will experience toxicity at some point. This is unacceptable in the adult cancer world, why is it acceptable for children? Curing is not enough. They deserve a lifetime of health. They need new drugs that aren't as toxic. We have the tools for this, but we need the funding."

"How will history look back on this congress? By cutting back, our children will suffer."

I wish I had brought a tape recorder. He was really a great speaker.

Next we heard from Nancy Goodman, founder of Kids V Cancer. She was introducing the Creating Hope Act, one of the acts we are asking our representatives to cosponsor. It is basically an incentive for drug companies to create pediatric cancer drugs. Right now 60% of new drugs for adult cancers come from the private sector. Guess how many new drugs come from the private sector for pediatric cancer? Zero. There is no profit to be made because there aren't as many patients. If there is no profit, there is no incentive for drug companies to manufacture new drugs. We have only had one new drug for pediatric cancer since the beginning discoveries of chemotherapy. ONE!! Even that drug was in the 80's. So yeah, they need an incentive, and this act gives them that. It will give them a "golden ticket" if they manufacture and get FDA approval on a pediatric cancer drug, which they can sell (worth hundreds of millions of dollars) to a drug company that wants to get in the "fast pass" line for FDA approval on another drug. Pretty clever if you ask me.

We were also asking for a cosponsor on a survivorship act to deal with the issues of long term side effects kids deal with long after they beat cancer.

We then received some training from Soapbox Advocacy Training. He was great. He taught us how to share personal stories, and always get back to what we are asking for. He taught us how to talk effectively and get them to listen. It was very valuable training and worth every penny they paid for them, whatever that was! He had us cracking up laughing and learning at the same time. Very well done.

Later that evening we heard from a young man (can't find his name anywhere) who was diagnosed with cancer just after he had signed on to a college with a baseball scholarship. His dream was to become a pro-baseball player. His backup plan, dream #2, was to be a doctor. He never got to play pro baseball. He finished school, although it wasn't to be a doctor. He brought his chemo to class with him, pushed play on his tape recorder, and somehow went through his treatments and college at the same time. But being a doctor was out of the question, chemo and radiation does a lot to your body and mind. So he isn't the hero he had planned to be. No, he's a better one. He has a new dream. With the crushing of both of his dreams emerged a new one. A dream that no child would ever have to suffer from cancer again. Now that, my friends, is a dream. Why are our heroes baseball stars anyway? I wanted a picture with him the way you want a picture with someone famous. He's a hero.

DAY 2:

The shuttle bus took us down to Capitol Hill for our rally. We heard from our champion representatives who are leading the fight in congress for pediatric cancer. Both great speakers and men I admire very much. Congressmen Michael McCaul from Texas and Chris Van Hollen from Maryland. One Republican, one Democrat, united for this cause. Because do we really see party lines when it comes to the children of our country?

Next came the best part of the weekend. Nine year old Jack Rolle got up in front of all of us, alone on the stand, and talked about his experience with a brain tumor. We saw cancer from the eyes of a child, the fear, the pain, the suffering, the sickness, in his own words. There was not a dry eye in the room. And he was given an immediate standing ovation for his courage and bravery. That is who we are fighting for. The child who hears "you have cancer" and knows that means you might die. The child who goes in for brain surgery and is afraid because his mother can't come back with him. We are fighting for him, for all of them.

Next we were off to meetingS with members. Their offices were incredibly busy with all that is going on right now, much more than last year, but we met with staff from Senator Hatch's office (LOVED her), Congressmen Chaffetz' office and Senator Mike Lee, who we were able to meet and talk with briefly.

Mystee had put together books with stories of 30 Utah kids who have battled or are battling cancer. Some survivors, some angels, and some fighters. We left a book with each of them, hoping they would take the time to look through and read some of them. We know it's an uphill battle, but if we don't ask, nobody will. And that would be a shame. So we'll keep asking until these kids get what they need. We both felt really good about how things went, and hopefully we will make some progress.

When it was over, we were exhausted and crashed at like 9. Except then we giggled and talked until 1am in our beds. It really was nice to be able to relax a little once it was all over.

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comments:

Thank you very much for doing this. I really appreciate it. I loved that you included some of the quotes from the speakers. I am so sure that the 9 year old boy's talk was so moving. Ugh - I just cannot imagine hearing it from a child's mouth. I hope you don't mind I posted some of your info on my blog.

P.S. I saw you and Brinley as you left the lab yesterday, I was disappointed we didn't quite get to meet up.

I have had tears and chills through this entire post! Thank you for representing all of us who couldn't go. Thank you for standing up for our kids and for the cure that they DESERVE! You guys are amazing! XOXOX

Hello, I came across your blog and wanted to let you know how much comfort it gave me/gives me to see that you are finished with your battle with cancer. My little boy Channing was diagnosed last month (March 9th) with ALL. So far things have been going really well, and this next Thurs they will test to make sure all the cancer is gone from his bones. If you are interested you can check out my sons blog chan-the-man.blogspot.comThank you for your inspiring faith and courage, and all that you do to help other families with cancer!!Alyssa Nielson